NCEPOD: A review of the quality of care provided to children and young adults with juvenile idiopathic arthritis (13 February 2025)

Summary

Juvenile idiopathic arthritis (JIA) is an autoimmune disease that affects around 10,000 children aged under 16 in the UK. It is a chronic disease and many patients will continue to have JIA into adulthood. JIA causes inflammation, pain and stiffness in joints, and can be have a big impact on a child's life. This study by the National Confidential Enquiry into Patient Outcome and Death (NCEPOD) looked at the quality of care provided to patients diagnosed with JIA. Patients were randomly selected for inclusion in the peer review process if their diagnosis had been made between 1st April 2019 and 31st March 2023, and they were diagnosed or experienced symptoms before their 16th birthday. Data included 374 clinician questionnaires and the assessment of 290 sets of case notes. In addition, 122 organisational questionnaires were returned along with 130 primary care questionnaires, survey responses from 68 parents/carers and 117 healthcare professionals. The study report  includes recommendations highlighting areas that are suitable for regular local clinical audit and quality improvement initiatives.

Content

Recommendations

1. Raise awareness of juvenile idiopathic arthritis and its symptoms with the healthcare professionals who will see this group of patients.
2. Streamline and publicise local referral pathways with clear measurable timelines for patients with suspected juvenile idiopathic arthritis.
3. Provide timely access to appropriately trained physiotherapy, occupational therapy, pain and psychology services at the diagnosis of juvenile idiopathic arthritis, and then as needed through adolescence and adulthood.
4. Offer age-appropriate information about juvenile idiopathic arthritis and medication risks and benefits to patients and their parents/carers at diagnosis and on an ongoing basis.
5. Provide training to the patient, if age-appropriate, and/or their parents/carers on how to administer subcutaneous injections for juvenile idiopathic arthritis at the point treatment is initiated.
6. Ensure timely access to intra-articular steroid injections by staff who have been trained to deliver age-appropriate care in units where local or general anaesthesia can be delivered.
7. Provide a holistic, developmentally appropriate rheumatology service for patients with juvenile idiopathic arthritis.
8. Develop NICE guidance for the management of juvenile idiopathic arthritis.